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Hi, my name is LFox!
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LFox
Community member Posts: 3 Listener
I'm new to this whole online community thing.
I'm looking for advice/ experience from any adult with "mild CP" (sorry about rating it, I have no other language for it). I have right sided Hemiplegia and am in my late 30s.
Since having my daughter 4 years ago, I feel I've been bent further out of shape, ie I'm more lop-sided in my gait, if that makes sense?
I am interested in anyone's experience similar to mine.
Also, has anyone had bunion surgery to correct big toe (mine is so bent over now and I think it might help)?
Thanks for reading.
I'm looking for advice/ experience from any adult with "mild CP" (sorry about rating it, I have no other language for it). I have right sided Hemiplegia and am in my late 30s.
Since having my daughter 4 years ago, I feel I've been bent further out of shape, ie I'm more lop-sided in my gait, if that makes sense?
I am interested in anyone's experience similar to mine.
Also, has anyone had bunion surgery to correct big toe (mine is so bent over now and I think it might help)?
Thanks for reading.
Comments
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Hi @LFox
Good Evening & Welcome it’s great to meet you today.
I am one of the Community Champion’s here at Scope.
Yes we have got a senior member who has got CP.
I will forward your post onto him for you if that would help.
Hi @Richard_Scope
Can you please offer me some help with this post as they would like to me someone who has got C/P.
@steve51
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Thanks so much!
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Hi @LFox - & welcome to the community. Thank you for joining & sharing about yourself. I do appreciate you 'rating' CP, but, in my opinion, you either have CP (or any other disorder, or not). However these do affect us all differently, & if it's causing problems, then it's good you've sought advice.I'm sure @Richard_Scope will help & advise. May I ask if you've mentioned your increasing problems to your GP. I know not easy currently, but perhaps you could ring? When possible, physiotherapy may help with your gait.
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Thank you for that, I have always felt nervous about not qualifying my disability. With a medically termed "mild impairment " label, identity for me has always been an issue. But that's a whole other discussion!! ?
I have talked to my GP, but as usual allowed myself to be fobbed off. I need to go back to them for sure. Ideally I'd love to see a CP specialist who will look at me as a whole. I have found that GPs have expected me to be the expert, which I find exhausting.
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Hi @LFox
Great to meet you! I have quad CP and I'm a dad too. Unfortunately, your experience is not unique. As we age people with CP experience a certain amount of physiological burnout due to the way we move and the stresses we put on our limbs and joints.
Technically, There is no such thing as a CP specialist. CP in adults should now be treated by a multi-disciplinary team as directed but the National Institute of Clinical Excellence (NICE). This is a set of best practice recommendations that I and Scope was involved in creating. Your G.P. should be aware of these and refer you accordingly. Here is a link to the NICE Guidance
There are centres of excellence that you can be referred to:
Robert Jones and Agnes Hunt Orthopaedic (RJAH)
University College London Hospital (UCLH)
These centres use multi-disciplinary teams that will cover neurology, orthopaedics, physiotherapy etc.
If I can support you with any of this, let me know.Scope
Specialist Information Officer and Cerebral Palsy Programme Lead'Concerned about another member's safety or wellbeing? Flag your concerns with us.'
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